Necrotizing Enterocolitis (NEC) is a gastrointestial disease which typically affects premature babies. The disease creates both an infection and inflammation in the bowels. It is still rare in the Neonatal Intensive Care Units, but when a preemie gets it, chances of survival decrease dramatically.

NEC seems to occur within the first two weeks of birth. The baby usually has started milk feeding. There is still no known cause, only theories. The good news is that research continues. Doctors like Dr. Jae Kim are making their best efforts in finding the cause and prevention of NEC today.

MY 15YR OLD NIECE GAVE BIRTH MAY 2 2011 HER BABY WEIGHIN IN A 2LBS 9 OUNCES.AND HE DEVELOPED NEC MAY 18TH 2011. AND RECENTLY PASSED MAY 24 2011. IM HAVING A VERY HARD TIME AS WELL AS OUR ENTIRE FAMILY.. SO HARD… I HAD NO IDEA WHAT NEC WAS…BEST WISHES TO ALL BABYS IN THE NICU..MAY GOD BLESS

Mikkel and Sara, I would love to talk to the two of you more about your issues. I am the mother of Elijah a 28 month old survivor of NEC. My son has stomach aches as well. His stomach also hardens and is distended do either of you experience this too?

I also would like to comment that my daughter devoloped NEC at nine months of age. It is a rare case for that to happen. This website is a MOJOR help!!!! Thanks to everyone that posts personal expierences. My daughter is seven and has a feeding tube due to the NEC. We will be traveling to get her to a rehabilation program to get her to attempt foods by mouth.GOD HAS BLESSED her and may GOD bless all neonatals and families with this deadly condition.

my their be peace and no more suffering to our loved ones,yet not forgotten the few memories left behind yet to creating a novel of love,may they be at rest in heavens above sending us guidence and strength,we shall be strong for them till we meet again <3 loving memories of baby giada lillyana

Mikkel, I know your post was several years ago, but my son Gary is 33 now and is a NEC survivor. When he was 18 he too had abdominal pain. He had grown alot of adhesions or scar tissue. The surgeon said his intestines were like a stuck up plate of spaghetti. They opened him up and took out the intestines, cut away the scar tissue and repacked him. It was the only surgery he has had since he was a baby and since then. I believe what you are feeling is probably scar tissue pulling. It is not “nothing”. If your doctor doesn’t want to look at what is going on, or wants to sweep it under the rug (because he probably hasn’t worked with post NEC adults and doesn’t know what to look for or do) get to a doctor who has had experience with it. You may have to make alot of phone calls, but there are doctors who know what to look for. Best of luck to you. I hope you see this note being nearly 3 yrs later. I just found this site.

Leighann,
A family member was born at 7 months weighing 800gram. He lost 20cm of bowel. Now he is 30, smokes, never knows what it is like not to have diahrrea and can no longer work at a construction site for more than 5 hours a day. How long did it take your son to recover? What re his limitations today?

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hello , I am a grandmother of 12 grand children, and have never experienced, a premature baby, in our entire family before, now. my grandson, prince,J. was born with NEC, on August18th 2015:mind you he weighed in at 6lbs, doctors kept saying he was going to be 4lbs. low in behold, my grandson is still having complications, from the NEC. I really need help,folks. can someone please, help me find the best Doctors to treatNec, in Brooklyn, New York or wherever, please. please God, send us the best. I really feel sad; and pray for anyone, experiencing, this. or experienced, this. please help us, know the right questions to ask the doctors.

Beth, once again, it is two years since your post. My son continues to have diarrhea. It is what he is used to. Several times he had a formed stool and he felt like he was sick! Anyway, of course nobody should smoke. Nicotine acts like an intestine stimulant, so might not be the best thing for him to do. The only limitations Gary has is in the foods he eats. He cannot eat seeds, or some foods that bother him. Other than that, he works for Kroger and works full shifts. He does use the bathroom more than most people, but he goes in and gets out. Right now his main issue is his bad teeth. For his first 9 months, when he was at Egleston Children’s hospital in Atlanta, he was on hyperalimentation and lipids only for 8 of those months. I think that made his teeth rot as an adult. He is facing dentures. Nobody in the family has bad teeth..so we think it was because of his nutritional state in his beginnings. He also has to drink alot of water so he doesn’t dehydrate. High caffeine drinks like Monster or even Mountain Dew can be dehydrating, so tell him to drink plenty of water.

hi I had my son at 26 weeks weighing 2lb 3oz 2 weeks later he got NEC so they had to do surgery and took 20cm off his large intestine or bowl I cant remember what they take they give him a stoma then a week later he wasn’t doing well so the docs asked for another x ray to find that he had NEC again and caused his intestines to be all clogged up so they had to pull his intestines out unravel them and take another 10cm off his large intestine they explained to me that is was a different part so where the stoma was they had to put the 2 ends the the took the 10 cm off saw them together and keep the stoma he was on alot of TPN and found that he got a hernia and had heart trouble but couldn’t do a clip or tie he needed both done after he was 35weeks the reversed the stoma and put the hernia back in my son came home on my birthday which was the best present ever but has been on netruprem 2 ready made milk since 39 weeks he has another hernia and his poo is still very dark green and sometimes finds it very hard to pass but he can eat little bits of normal food son is now 17months old and im scared of if it can come back or what will his future hold with being in pain I have been told to get him on DLA but I don’t want to because its classed as short bowl syndrome and I would like to know if this is what it is after having 30cm removed from his large intestines and the surgeon said if he got it again it would be less likely he would make it as he didn’t have much left and it scares me as I had a son born at 24 weeks and he got NEC in 2000 and sadly his was that bad his full intestines had holes all over they couldn’t put any of it together and passed away the same night sorry for this end bit but its important to me how bad can this get for my son thank you and for all those angel baby’s R.I.P (REST IN PARADISE)